Re: Apraxia of speech? anyone??

[Guest guest]

We deal with this issues actually with our son, Marquis. He was

exposed to cocaine prenatally from his birth mom and it has caused a very

similar condition which they have labeled Oral motor sequencing dysfunction.

Asenath and Zipporrah's SP therapist was just in the room and mentioned it

was the same issue and the treatment is basically the same as well. With

Marquis (he is 3), he can say quite a few words, but when putting together

several words, it all comes out mushy so noone can understand him. The

therapists have used the technique of having him repeatedly say things like

" ba-ba-ba-ba " without halting between the sounds and then as he has gotten

better they are just starting to have him try to say different sounds

without halting such as " ba-da-ba-da. " They use a car or train and have him

push it as he says the sound and tell him the vehicle can't move without the

sound. I was told that this is one of the hardest things to deal with in

speech problems as it is a disconnection that takes place between the brain

and the mouth (or other areas of the brain) so unless rewiring can take

place, it is very hard to overcome. The therapist can't just say " do this "

and have them get better. The way I found links on the subject was to just

type in the words " apraxia " " dispraxia " " oral motor sequencing in speech "

and motor planning apraxia. "

Zipporrah babbles tons but doesn't have very many words either at this

point. Her SP therapist says she is at a 9 month level for speech

presently. We are trying to teach her some sign language as well, but at 13

months of age, we aren't accomplishing anything yet. She used to imitate us

several months ago, but over the last couple of months she has slowed way

down in that area. Her therapist is trying to work with a few works with

her each session such as cup, spoon, block, and ball, but she isn't making

much progress thus far. Does your son babble or do you know approximately

what age range he is at in his speech?

Zipporrah has had the motor planning problems and it has caused issues

in different areas. She has been a hard one to figure out honestly because

she has several other possibilities contributing to her walking problems as

well as the motor planning. She has major fatigue issues, symptoms of

balance disturbances, muscle weakness, and of course the motor planning

dispraxia/apraxia; all of which are stroke damage issues. Thankfully with

Zipporrah, her abilities fluxuate and so some days are better than other

days.

Let me know if you need any further help. I know this is a frustrating

issue to deal with. We are hoping Zipporrah begins to speak more, but know

with all her episodes and feeding issues, it is all subject to change and

hard to know what to expect.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Apraxia of speech? anyone??

>

>

> has been seeing a speech therapist for several months now..

> hes 2 years old (last week!) and has 4 words.

> once we started seeing the therapist we worked on signs and he

> seriously has several dozen signs already and is pieceing them

> together to make small sentances... she said this is awsome and that

> receptive speech is actually ahead for his age.

> but hes still only got 4 words, and when he says them its HARD work

> for him.

> This combined with alot of other signs and symptoms hes showing

> (difficulty copying faces, making his mouth do what he wants it to,

> etc) has ultimately led her to conclude that he likely has

> developmental apraxia of speech. she said it is a type of motor

> planning disorder, which immidiately made me think of you Darla!

> (Zipporah has this with her gross motor right?) this is also

> potentially a cause of his gait difficulties, however they havent

> decided that yet.

>

> so im curious, does anyone else deal with this? my understanding is

> we have gotten a diagnosis at a very young age, which is good as far

> as therapy goes... but does anyone know of any resources (websites

> etc?) that deal with this? I had never heard of it, so im going in

> completley blind...

> thanks!

> Keely

>

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

We deal with this issues actually with our son, Marquis. He was

exposed to cocaine prenatally from his birth mom and it has caused a very

similar condition which they have labeled Oral motor sequencing dysfunction.

Asenath and Zipporrah's SP therapist was just in the room and mentioned it

was the same issue and the treatment is basically the same as well. With

Marquis (he is 3), he can say quite a few words, but when putting together

several words, it all comes out mushy so noone can understand him. The

therapists have used the technique of having him repeatedly say things like

" ba-ba-ba-ba " without halting between the sounds and then as he has gotten

better they are just starting to have him try to say different sounds

without halting such as " ba-da-ba-da. " They use a car or train and have him

push it as he says the sound and tell him the vehicle can't move without the

sound. I was told that this is one of the hardest things to deal with in

speech problems as it is a disconnection that takes place between the brain

and the mouth (or other areas of the brain) so unless rewiring can take

place, it is very hard to overcome. The therapist can't just say " do this "

and have them get better. The way I found links on the subject was to just

type in the words " apraxia " " dispraxia " " oral motor sequencing in speech "

and motor planning apraxia. "

Zipporrah babbles tons but doesn't have very many words either at this

point. Her SP therapist says she is at a 9 month level for speech

presently. We are trying to teach her some sign language as well, but at 13

months of age, we aren't accomplishing anything yet. She used to imitate us

several months ago, but over the last couple of months she has slowed way

down in that area. Her therapist is trying to work with a few works with

her each session such as cup, spoon, block, and ball, but she isn't making

much progress thus far. Does your son babble or do you know approximately

what age range he is at in his speech?

Zipporrah has had the motor planning problems and it has caused issues

in different areas. She has been a hard one to figure out honestly because

she has several other possibilities contributing to her walking problems as

well as the motor planning. She has major fatigue issues, symptoms of

balance disturbances, muscle weakness, and of course the motor planning

dispraxia/apraxia; all of which are stroke damage issues. Thankfully with

Zipporrah, her abilities fluxuate and so some days are better than other

days.

Let me know if you need any further help. I know this is a frustrating

issue to deal with. We are hoping Zipporrah begins to speak more, but know

with all her episodes and feeding issues, it is all subject to change and

hard to know what to expect.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Apraxia of speech? anyone??

>

>

> has been seeing a speech therapist for several months now..

> hes 2 years old (last week!) and has 4 words.

> once we started seeing the therapist we worked on signs and he

> seriously has several dozen signs already and is pieceing them

> together to make small sentances... she said this is awsome and that

> receptive speech is actually ahead for his age.

> but hes still only got 4 words, and when he says them its HARD work

> for him.

> This combined with alot of other signs and symptoms hes showing

> (difficulty copying faces, making his mouth do what he wants it to,

> etc) has ultimately led her to conclude that he likely has

> developmental apraxia of speech. she said it is a type of motor

> planning disorder, which immidiately made me think of you Darla!

> (Zipporah has this with her gross motor right?) this is also

> potentially a cause of his gait difficulties, however they havent

> decided that yet.

>

> so im curious, does anyone else deal with this? my understanding is

> we have gotten a diagnosis at a very young age, which is good as far

> as therapy goes... but does anyone know of any resources (websites

> etc?) that deal with this? I had never heard of it, so im going in

> completley blind...

> thanks!

> Keely

>

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

[Guest guest]

Keely,,

Your SLP is right that it is a motor planning disorder. I'm a pediatric SLP too so it sounds like she is right on the mark. You can learn more about it at the ASHA website (American Speech/Language Hearing Association), and if you still want more info i can send you some other links. Ask your SLP if she knows about PROMPT cueing. I've just started using it with some of my more apraxic kiddos and and seeing some nice results. Hope this helps.

ruth

[Guest guest]

Keely,,

Your SLP is right that it is a motor planning disorder. I'm a pediatric SLP too so it sounds like she is right on the mark. You can learn more about it at the ASHA website (American Speech/Language Hearing Association), and if you still want more info i can send you some other links. Ask your SLP if she knows about PROMPT cueing. I've just started using it with some of my more apraxic kiddos and and seeing some nice results. Hope this helps.

ruth

[Guest guest]

Darla,

That does sound very similar...

As for signing, stick with it, we tried with around 12

months and it didnt take at all, but at 20 months we tried again,

and our therapist says he has learned more singing in the past 4

months than she has seen most 3 year olds pick up... he just wasnt

ready at 1...

s receptive language (understanding) is pegged at 24 months,

but his expressive language (speaking) is at 0-12 month range... he

has 4 words that he only uses very rarely...

do you know what Zipporahs receptive language level is at?

Anyways i have to run, Ill finish this up later! thanks for

responding!

Keely

> We deal with this issues actually with our son, Marquis. He

was

> exposed to cocaine prenatally from his birth mom and it has caused

a very

> similar condition which they have labeled Oral motor sequencing

dysfunction.

> Asenath and Zipporrah's SP therapist was just in the room and

mentioned it

> was the same issue and the treatment is basically the same as

well. With

> Marquis (he is 3), he can say quite a few words, but when putting

together

> several words, it all comes out mushy so noone can understand

him. The

> therapists have used the technique of having him repeatedly say

things like

> " ba-ba-ba-ba " without halting between the sounds and then as he

has gotten

> better they are just starting to have him try to say different

sounds

> without halting such as " ba-da-ba-da. " They use a car or train

and have him

> push it as he says the sound and tell him the vehicle can't move

without the

> sound. I was told that this is one of the hardest things to deal

with in

> speech problems as it is a disconnection that takes place between

the brain

> and the mouth (or other areas of the brain) so unless rewiring can

take

> place, it is very hard to overcome. The therapist can't just

say " do this "

> and have them get better. The way I found links on the subject

was to just

> type in the words " apraxia " " dispraxia " " oral motor sequencing in

speech "

> and motor planning apraxia. "

> Zipporrah babbles tons but doesn't have very many words

either at this

> point. Her SP therapist says she is at a 9 month level for speech

> presently. We are trying to teach her some sign language as well,

but at 13

> months of age, we aren't accomplishing anything yet. She used to

imitate us

> several months ago, but over the last couple of months she has

slowed way

> down in that area. Her therapist is trying to work with a few

works with

> her each session such as cup, spoon, block, and ball, but she

isn't making

> much progress thus far. Does your son babble or do you know

approximately

> what age range he is at in his speech?

> Zipporrah has had the motor planning problems and it has

caused issues

> in different areas. She has been a hard one to figure out

honestly because

> she has several other possibilities contributing to her walking

problems as

> well as the motor planning. She has major fatigue issues,

symptoms of

> balance disturbances, muscle weakness, and of course the motor

planning

> dispraxia/apraxia; all of which are stroke damage issues.

Thankfully with

> Zipporrah, her abilities fluxuate and so some days are better than

other

> days.

> Let me know if you need any further help. I know this is a

frustrating

> issue to deal with. We are hoping Zipporrah begins to speak more,

but know

> with all her episodes and feeding issues, it is all subject to

change and

> hard to know what to expect.

>

> See www.caringbridge.org/ia/mitomomof9 and this link to see a real

look into

> Mito using a photo collage of my girls at www.heartbeatsformito.org

> Darla: mommy to

> Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-

tube,

> hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic

vomiting...

> Zipporrah (12 months) Mito, strokes, neuro-motor planning

dysfunction, SID,

> GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian

artery,

> disautonomy, hypo & hypertonicity, migraines, possible seizures,

dumping

> syndrome, iron deficiency...

> Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia

(3), &

> Marquis (2) (some with Mito symptoms)

>

>

> Apraxia of speech? anyone??

>

>

> >

> >

> > has been seeing a speech therapist for several months

now..

> > hes 2 years old (last week!) and has 4 words.

> > once we started seeing the therapist we worked on signs and he

> > seriously has several dozen signs already and is pieceing them

> > together to make small sentances... she said this is awsome and

that

> > receptive speech is actually ahead for his age.

> > but hes still only got 4 words, and when he says them its HARD

work

> > for him.

> > This combined with alot of other signs and symptoms hes showing

> > (difficulty copying faces, making his mouth do what he wants it

to,

> > etc) has ultimately led her to conclude that he likely has

> > developmental apraxia of speech. she said it is a type of motor

> > planning disorder, which immidiately made me think of you Darla!

> > (Zipporah has this with her gross motor right?) this is also

> > potentially a cause of his gait difficulties, however they havent

> > decided that yet.

> >

> > so im curious, does anyone else deal with this? my

understanding is

> > we have gotten a diagnosis at a very young age, which is good as

far

> > as therapy goes... but does anyone know of any resources

(websites

> > etc?) that deal with this? I had never heard of it, so im going

in

> > completley blind...

> > thanks!

> > Keely

> >

> >

> >

> >

> >

> >

> > Please contact mito-owner with any problems or

questions.

> >

[Guest guest]

Darla,

That does sound very similar...

As for signing, stick with it, we tried with around 12

months and it didnt take at all, but at 20 months we tried again,

and our therapist says he has learned more singing in the past 4

months than she has seen most 3 year olds pick up... he just wasnt

ready at 1...

s receptive language (understanding) is pegged at 24 months,

but his expressive language (speaking) is at 0-12 month range... he

has 4 words that he only uses very rarely...

do you know what Zipporahs receptive language level is at?

Anyways i have to run, Ill finish this up later! thanks for

responding!

Keely

> We deal with this issues actually with our son, Marquis. He

was

> exposed to cocaine prenatally from his birth mom and it has caused

a very

> similar condition which they have labeled Oral motor sequencing

dysfunction.

> Asenath and Zipporrah's SP therapist was just in the room and

mentioned it

> was the same issue and the treatment is basically the same as

well. With

> Marquis (he is 3), he can say quite a few words, but when putting

together

> several words, it all comes out mushy so noone can understand

him. The

> therapists have used the technique of having him repeatedly say

things like

> " ba-ba-ba-ba " without halting between the sounds and then as he

has gotten

> better they are just starting to have him try to say different

sounds

> without halting such as " ba-da-ba-da. " They use a car or train

and have him

> push it as he says the sound and tell him the vehicle can't move

without the

> sound. I was told that this is one of the hardest things to deal

with in

> speech problems as it is a disconnection that takes place between

the brain

> and the mouth (or other areas of the brain) so unless rewiring can

take

> place, it is very hard to overcome. The therapist can't just

say " do this "

> and have them get better. The way I found links on the subject

was to just

> type in the words " apraxia " " dispraxia " " oral motor sequencing in

speech "

> and motor planning apraxia. "

> Zipporrah babbles tons but doesn't have very many words

either at this

> point. Her SP therapist says she is at a 9 month level for speech

> presently. We are trying to teach her some sign language as well,

but at 13

> months of age, we aren't accomplishing anything yet. She used to

imitate us

> several months ago, but over the last couple of months she has

slowed way

> down in that area. Her therapist is trying to work with a few

works with

> her each session such as cup, spoon, block, and ball, but she

isn't making

> much progress thus far. Does your son babble or do you know

approximately

> what age range he is at in his speech?

> Zipporrah has had the motor planning problems and it has

caused issues

> in different areas. She has been a hard one to figure out

honestly because

> she has several other possibilities contributing to her walking

problems as

> well as the motor planning. She has major fatigue issues,

symptoms of

> balance disturbances, muscle weakness, and of course the motor

planning

> dispraxia/apraxia; all of which are stroke damage issues.

Thankfully with

> Zipporrah, her abilities fluxuate and so some days are better than

other

> days.

> Let me know if you need any further help. I know this is a

frustrating

> issue to deal with. We are hoping Zipporrah begins to speak more,

but know

> with all her episodes and feeding issues, it is all subject to

change and

> hard to know what to expect.

>

> See www.caringbridge.org/ia/mitomomof9 and this link to see a real

look into

> Mito using a photo collage of my girls at www.heartbeatsformito.org

> Darla: mommy to

> Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-

tube,

> hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic

vomiting...

> Zipporrah (12 months) Mito, strokes, neuro-motor planning

dysfunction, SID,

> GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian

artery,

> disautonomy, hypo & hypertonicity, migraines, possible seizures,

dumping

> syndrome, iron deficiency...

> Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia

(3), &

> Marquis (2) (some with Mito symptoms)

>

>

> Apraxia of speech? anyone??

>

>

> >

> >

> > has been seeing a speech therapist for several months

now..

> > hes 2 years old (last week!) and has 4 words.

> > once we started seeing the therapist we worked on signs and he

> > seriously has several dozen signs already and is pieceing them

> > together to make small sentances... she said this is awsome and

that

> > receptive speech is actually ahead for his age.

> > but hes still only got 4 words, and when he says them its HARD

work

> > for him.

> > This combined with alot of other signs and symptoms hes showing

> > (difficulty copying faces, making his mouth do what he wants it

to,

> > etc) has ultimately led her to conclude that he likely has

> > developmental apraxia of speech. she said it is a type of motor

> > planning disorder, which immidiately made me think of you Darla!

> > (Zipporah has this with her gross motor right?) this is also

> > potentially a cause of his gait difficulties, however they havent

> > decided that yet.

> >

> > so im curious, does anyone else deal with this? my

understanding is

> > we have gotten a diagnosis at a very young age, which is good as

far

> > as therapy goes... but does anyone know of any resources

(websites

> > etc?) that deal with this? I had never heard of it, so im going

in

> > completley blind...

> > thanks!

> > Keely

> >

> >

> >

> >

> >

> >

> > Please contact mito-owner with any problems or

questions.

> >

[Guest guest]

I have heard of Apraxia (I think in reference to Grace's speech problems), but I cannot completely remember what it means. I know it has to do with a block in receptive language. The child understands, yet cannot communicate a responce. This is our problem with Grace (she is 2 1/2). She is completely developmentaly normal with understanding what is said, she just has very little receptive language. Finally now she is able to say alot of words, but they are very muffled and hard to understand. She has just started saying two word sentences, but we noticed they are all memorized phrases. We strongly encourage sign, but she rarely does the signs, yet she understands most of them.

As of now she is in speech therapy weekly to help with sign and encourage speech. She also goes to OT weekly to help with low facial muscle tone (and other things.) Her therapists have decided that while she does have a receptive language problem, the biggest problem is that her mouth is not strong enough to form words correctly. She has a number of letters she cannot say at all. They decided this because of her feeding issues, drooling issues and by wich letters she cannot say. She is unable to drink out of a cup without choking (she uses a sippy with a stopper to slow down the liquids). They can also tell wich group of muscles are affected by wich letters and sounds are not pronounced correctly, or at all.

I would suggest maybe having him evaluated by an OT. They are the ones (and many really good speech therapists) that can tell if there is a physical problem to his speech problems. They do go about things differently when there are muscle issues involved. We use alot of muscle building techniques, such as blowing bubbles and we will start whistles when she gets more control.

Best wishes

Claim your Space NOW! Have fun sharing blogs, photos and music lists online.

[Guest guest]

I have heard of Apraxia (I think in reference to Grace's speech problems), but I cannot completely remember what it means. I know it has to do with a block in receptive language. The child understands, yet cannot communicate a responce. This is our problem with Grace (she is 2 1/2). She is completely developmentaly normal with understanding what is said, she just has very little receptive language. Finally now she is able to say alot of words, but they are very muffled and hard to understand. She has just started saying two word sentences, but we noticed they are all memorized phrases. We strongly encourage sign, but she rarely does the signs, yet she understands most of them.

As of now she is in speech therapy weekly to help with sign and encourage speech. She also goes to OT weekly to help with low facial muscle tone (and other things.) Her therapists have decided that while she does have a receptive language problem, the biggest problem is that her mouth is not strong enough to form words correctly. She has a number of letters she cannot say at all. They decided this because of her feeding issues, drooling issues and by wich letters she cannot say. She is unable to drink out of a cup without choking (she uses a sippy with a stopper to slow down the liquids). They can also tell wich group of muscles are affected by wich letters and sounds are not pronounced correctly, or at all.

I would suggest maybe having him evaluated by an OT. They are the ones (and many really good speech therapists) that can tell if there is a physical problem to his speech problems. They do go about things differently when there are muscle issues involved. We use alot of muscle building techniques, such as blowing bubbles and we will start whistles when she gets more control.

Best wishes

Claim your Space NOW! Have fun sharing blogs, photos and music lists online.

[Guest guest]

Will also is thought to have Apraxia. The best site I found was the

Apraxia kids site, and the list associated with it. There is a lot of

info, and some really good people.

www.apraxia-kids.org

Hope that helps,

J

Colo.

[Guest guest]

Will also is thought to have Apraxia. The best site I found was the

Apraxia kids site, and the list associated with it. There is a lot of

info, and some really good people.

www.apraxia-kids.org

Hope that helps,

J

Colo.

[Guest guest]

I am not sure what her receptive language level is but do know she seems to

understand a lot more than she can speak. When we ask her to pick the ball

when holding both a ball and a block, she most always grabs for the right

one. This is one area the SP therapist is working on each session. We have

been encouraged to see she understands some of these things, not only

because of the delayed speech but also because she has had some major hits

to her processing areas of her brain.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Apraxia of speech? anyone??

> >

> >

> > >

> > >

> > > has been seeing a speech therapist for several months

> now..

> > > hes 2 years old (last week!) and has 4 words.

> > > once we started seeing the therapist we worked on signs and he

> > > seriously has several dozen signs already and is pieceing them

> > > together to make small sentances... she said this is awsome and

> that

> > > receptive speech is actually ahead for his age.

> > > but hes still only got 4 words, and when he says them its HARD

> work

> > > for him.

> > > This combined with alot of other signs and symptoms hes showing

> > > (difficulty copying faces, making his mouth do what he wants it

> to,

> > > etc) has ultimately led her to conclude that he likely has

> > > developmental apraxia of speech. she said it is a type of motor

> > > planning disorder, which immidiately made me think of you Darla!

> > > (Zipporah has this with her gross motor right?) this is also

> > > potentially a cause of his gait difficulties, however they havent

> > > decided that yet.

> > >

> > > so im curious, does anyone else deal with this? my

> understanding is

> > > we have gotten a diagnosis at a very young age, which is good as

> far

> > > as therapy goes... but does anyone know of any resources

> (websites

> > > etc?) that deal with this? I had never heard of it, so im going

> in

> > > completley blind...

> > > thanks!

> > > Keely

> > >

> > >

> > >

> > >

> > >

> > >

> > > Please contact mito-owner with any problems or

> questions.

> > >

[Guest guest]

I am not sure what her receptive language level is but do know she seems to

understand a lot more than she can speak. When we ask her to pick the ball

when holding both a ball and a block, she most always grabs for the right

one. This is one area the SP therapist is working on each session. We have

been encouraged to see she understands some of these things, not only

because of the delayed speech but also because she has had some major hits

to her processing areas of her brain.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Apraxia of speech? anyone??

> >

> >

> > >

> > >

> > > has been seeing a speech therapist for several months

> now..

> > > hes 2 years old (last week!) and has 4 words.

> > > once we started seeing the therapist we worked on signs and he

> > > seriously has several dozen signs already and is pieceing them

> > > together to make small sentances... she said this is awsome and

> that

> > > receptive speech is actually ahead for his age.

> > > but hes still only got 4 words, and when he says them its HARD

> work

> > > for him.

> > > This combined with alot of other signs and symptoms hes showing

> > > (difficulty copying faces, making his mouth do what he wants it

> to,

> > > etc) has ultimately led her to conclude that he likely has

> > > developmental apraxia of speech. she said it is a type of motor

> > > planning disorder, which immidiately made me think of you Darla!

> > > (Zipporah has this with her gross motor right?) this is also

> > > potentially a cause of his gait difficulties, however they havent

> > > decided that yet.

> > >

> > > so im curious, does anyone else deal with this? my

> understanding is

> > > we have gotten a diagnosis at a very young age, which is good as

> far

> > > as therapy goes... but does anyone know of any resources

> (websites

> > > etc?) that deal with this? I had never heard of it, so im going

> in

> > > completley blind...

> > > thanks!

> > > Keely

> > >

> > >

> > >

> > >

> > >

> > >

> > > Please contact mito-owner with any problems or

> questions.

> > >

[Guest guest]

We have a 6 year old daughter who is nonverbal. Except every now and then

words will pop out. Her receptive language is up there. You can tell her

to do certain things and she will follow through and ask her to point out

several things in a book even real small things she will know where they

are. I will have to look or ask her speech teacher where Leah is at with

language. She knows minimal signs right now. Does great with pictures. She

points to things she wants. I could have sworn at the hotel the other day

I heard her say "Hey Mom". So did my husband and even the kids heard it

so it wasn't just little old me thinking that. If your child has low tone

issues it could be trouble with his tongue placing properly. Don't give

up the ship; especially if he is just starting with speech. Leah has had

speech for 6 years now. She had cleft palate issues and that's why she started

so early. If your child is doing great with sign language that is wonderful.

At least your child is communicating and you don't have to always have a

guessing game. We are always asking Leah things in the form of a question.

So it's great if sentences are coming together. I guess from me working

at our school and there are a few children who are hard of hearing and are

nonverbal, they grunt and use tones like that to try and get ideas across

to people who don't know sign language. You are learning two languages yourself

and that is a joy so that you may be able to help someone out in the store

next time you see them because you know sign language.

Nerenhausen

mom to Leah

ilikemonstertrucks wrote:

Darla,

That does sound very similar... As for signing, stick with it, we tried with around 12 months and it didnt take at all, but at 20 months we tried again, and our therapist says he has learned more singing in the past 4 months than she has seen most 3 year olds pick up... he just wasnt ready at 1... s receptive language (understanding) is pegged at 24 months, but his expressive language (speaking) is at 0-12 month range... he has 4 words that he only uses very rarely... do you know what Zipporahs receptive language level is at? Anyways i have to run, Ill finish this up later! thanks for responding! Keely

We deal with this issues actually with our son, Marquis. He

was

exposed to cocaine prenatally from his birth mom and it has caused

a very

similar condition which they have labeled Oral motor sequencing

dysfunction.

Asenath and Zipporrah's SP therapist was just in the room and

mentioned it

was the same issue and the treatment is basically the same as

well. With

Marquis (he is 3), he can say quite a few words, but when putting

together

several words, it all comes out mushy so noone can understand

him. The

therapists have used the technique of having him repeatedly say

things like

"ba-ba-ba-ba" without halting between the sounds and then as he

has gotten

better they are just starting to have him try to say different

sounds

without halting such as "ba-da-ba-da." They use a car or train

and have him

push it as he says the sound and tell him the vehicle can't move

without the

sound. I was told that this is one of the hardest things to deal

with in

speech problems as it is a disconnection that takes place between

the brain

and the mouth (or other areas of the brain) so unless rewiring can

take

place, it is very hard to overcome. The therapist can't just

say "do this"

and have them get better. The way I found links on the subject

was to just

type in the words "apraxia" "dispraxia" "oral motor sequencing in

speech"

and motor planning apraxia."

Zipporrah babbles tons but doesn't have very many words

either at this

point. Her SP therapist says she is at a 9 month level for speech presently. We are trying to teach her some sign language as well,

but at 13

months of age, we aren't accomplishing anything yet. She used to

imitate us

several months ago, but over the last couple of months she has

slowed way

down in that area. Her therapist is trying to work with a few

works with

her each session such as cup, spoon, block, and ball, but she

isn't making

much progress thus far. Does your son babble or do you know

approximately

what age range he is at in his speech?

Zipporrah has had the motor planning problems and it has

caused issues

in different areas. She has been a hard one to figure out

honestly because

she has several other possibilities contributing to her walking

problems as

well as the motor planning. She has major fatigue issues,

symptoms of

balance disturbances, muscle weakness, and of course the motor

planning

dispraxia/apraxia; all of which are stroke damage issues.

Thankfully with

Zipporrah, her abilities fluxuate and so some days are better than

other

days.

Let me know if you need any further help. I know this is a

frustrating

issue to deal with. We are hoping Zipporrah begins to speak more,

but know

with all her episodes and feeding issues, it is all subject to

change and

hard to know what to expect.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real

look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-

tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic

vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning

dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian

artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures,

dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia

(3), &

Marquis (2) (some with Mito symptoms)

Apraxia of speech? anyone??

has been seeing a speech therapist for several months

now..

hes 2 years old (last week!) and has 4 words.

once we started seeing the therapist we worked on signs and he

seriously has several dozen signs already and is pieceing them

together to make small sentances... she said this is awsome and

that

receptive speech is actually ahead for his age.

but hes still only got 4 words, and when he says them its HARD

work

for him.

This combined with alot of other signs and symptoms hes showing

(difficulty copying faces, making his mouth do what he wants it

to,

etc) has ultimately led her to conclude that he likely has

developmental apraxia of speech. she said it is a type of motor

planning disorder, which immidiately made me think of you Darla!

(Zipporah has this with her gross motor right?) this is also

potentially a cause of his gait difficulties, however they havent

decided that yet.

so im curious, does anyone else deal with this? my

understanding is

we have gotten a diagnosis at a very young age, which is good as

far

as therapy goes... but does anyone know of any resources

(websites

etc?) that deal with this? I had never heard of it, so im going

in

completley blind...

thanks!

Keely

Please contact mito-owner with any problems or

questions.

[Guest guest]

We have a 6 year old daughter who is nonverbal. Except every now and then

words will pop out. Her receptive language is up there. You can tell her

to do certain things and she will follow through and ask her to point out

several things in a book even real small things she will know where they

are. I will have to look or ask her speech teacher where Leah is at with

language. She knows minimal signs right now. Does great with pictures. She

points to things she wants. I could have sworn at the hotel the other day

I heard her say "Hey Mom". So did my husband and even the kids heard it

so it wasn't just little old me thinking that. If your child has low tone

issues it could be trouble with his tongue placing properly. Don't give

up the ship; especially if he is just starting with speech. Leah has had

speech for 6 years now. She had cleft palate issues and that's why she started

so early. If your child is doing great with sign language that is wonderful.

At least your child is communicating and you don't have to always have a

guessing game. We are always asking Leah things in the form of a question.

So it's great if sentences are coming together. I guess from me working

at our school and there are a few children who are hard of hearing and are

nonverbal, they grunt and use tones like that to try and get ideas across

to people who don't know sign language. You are learning two languages yourself

and that is a joy so that you may be able to help someone out in the store

next time you see them because you know sign language.

Nerenhausen

mom to Leah

ilikemonstertrucks wrote:

Darla,

That does sound very similar... As for signing, stick with it, we tried with around 12 months and it didnt take at all, but at 20 months we tried again, and our therapist says he has learned more singing in the past 4 months than she has seen most 3 year olds pick up... he just wasnt ready at 1... s receptive language (understanding) is pegged at 24 months, but his expressive language (speaking) is at 0-12 month range... he has 4 words that he only uses very rarely... do you know what Zipporahs receptive language level is at? Anyways i have to run, Ill finish this up later! thanks for responding! Keely

We deal with this issues actually with our son, Marquis. He

was

exposed to cocaine prenatally from his birth mom and it has caused

a very

similar condition which they have labeled Oral motor sequencing

dysfunction.

Asenath and Zipporrah's SP therapist was just in the room and

mentioned it

was the same issue and the treatment is basically the same as

well. With

Marquis (he is 3), he can say quite a few words, but when putting

together

several words, it all comes out mushy so noone can understand

him. The

therapists have used the technique of having him repeatedly say

things like

"ba-ba-ba-ba" without halting between the sounds and then as he

has gotten

better they are just starting to have him try to say different

sounds

without halting such as "ba-da-ba-da." They use a car or train

and have him

push it as he says the sound and tell him the vehicle can't move

without the

sound. I was told that this is one of the hardest things to deal

with in

speech problems as it is a disconnection that takes place between

the brain

and the mouth (or other areas of the brain) so unless rewiring can

take

place, it is very hard to overcome. The therapist can't just

say "do this"

and have them get better. The way I found links on the subject

was to just

type in the words "apraxia" "dispraxia" "oral motor sequencing in

speech"

and motor planning apraxia."

Zipporrah babbles tons but doesn't have very many words

either at this

point. Her SP therapist says she is at a 9 month level for speech presently. We are trying to teach her some sign language as well,

but at 13

months of age, we aren't accomplishing anything yet. She used to

imitate us

several months ago, but over the last couple of months she has

slowed way

down in that area. Her therapist is trying to work with a few

works with

her each session such as cup, spoon, block, and ball, but she

isn't making

much progress thus far. Does your son babble or do you know

approximately

what age range he is at in his speech?

Zipporrah has had the motor planning problems and it has

caused issues

in different areas. She has been a hard one to figure out

honestly because

she has several other possibilities contributing to her walking

problems as

well as the motor planning. She has major fatigue issues,

symptoms of

balance disturbances, muscle weakness, and of course the motor

planning

dispraxia/apraxia; all of which are stroke damage issues.

Thankfully with

Zipporrah, her abilities fluxuate and so some days are better than

other

days.

Let me know if you need any further help. I know this is a

frustrating

issue to deal with. We are hoping Zipporrah begins to speak more,

but know

with all her episodes and feeding issues, it is all subject to

change and

hard to know what to expect.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real

look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-

tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic

vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning

dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian

artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures,

dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia

(3), &

Marquis (2) (some with Mito symptoms)

Apraxia of speech? anyone??

has been seeing a speech therapist for several months

now..

hes 2 years old (last week!) and has 4 words.

once we started seeing the therapist we worked on signs and he

seriously has several dozen signs already and is pieceing them

together to make small sentances... she said this is awsome and

that

receptive speech is actually ahead for his age.

but hes still only got 4 words, and when he says them its HARD

work

for him.

This combined with alot of other signs and symptoms hes showing

(difficulty copying faces, making his mouth do what he wants it

to,

etc) has ultimately led her to conclude that he likely has

developmental apraxia of speech. she said it is a type of motor

planning disorder, which immidiately made me think of you Darla!

(Zipporah has this with her gross motor right?) this is also

potentially a cause of his gait difficulties, however they havent

decided that yet.

so im curious, does anyone else deal with this? my

understanding is

we have gotten a diagnosis at a very young age, which is good as

far

as therapy goes... but does anyone know of any resources

(websites

etc?) that deal with this? I had never heard of it, so im going

in

completley blind...

thanks!

Keely

Please contact mito-owner with any problems or

questions.